Autism in Russia

Previous posts have looked at autism overseas. RIA Novosti reports on Russia:

Yet despite the importing of such foreign techniques [ABA], which some experts say have slowly but surely begun to take root in Russia, few solutions exist for the crippling stereotypes and intolerance many sufferers and families face. If debates in the West are already tackling the ethical issue of predicting autism before birth, in Russia even the idea of autism is still nearly taboo.

Svetlana Budnitskaya, who as a senior manager for family and child affairs at the Charitable Fund “Joint” works with autistic children, recalls an incident during a recent visit to Kaliningrad, when a mother expressed to Budnitskaya her “shame” after her autistic child acted out in public.

“Someone just called the police and said, ‘Get this kid out of here,’” she says. “That hit me hard, because society is so unprepared for this, for how to treat these people. And instead of the mother simply accepting the child, the mother becomes socially embarrassed.”

In another instance, a note sent from the Moscow Aquarium last April to teachers who tried to organize a visit with a group of autistic children read: “Refused. Visitors do not like to see the disabled – it disappoints them. It is unacceptable.”

Perhaps the most appropriate, if unsettling, indicator of Russia’s uneasiness with the disorder is the lack of official statistics that keep track of the number of affected children in Russia. If applying researchers’ estimates that between two and 20 cases of autism appear per 20,000 children, Russia may be home to around 200,000 autistic children, according to the St. Petersburg-based Fathers and Sons Fund.

Even more worrying, however, is the open prejudice encountered from the most unlikely sources, including government officials. Sergei Buyankin, a Moscow city official, made headlines last May when he reportedly said, “Hitler buried kids like this in the ground,” while speaking about a local private school, St. George’s, which caters to special needs children.

Vaccine Opt-Outs in California Private Schools

AP reports:

Parents who send their children to private schools in California are much more likely to opt out of immunizations than their public school counterparts, an Associated Press analysis has found, and not even the recent re-emergence of whooping cough has halted the downward trajectory of vaccinations among these students.

The state surveys all schools with at least 10 kindergartners to determine how many have all the recommended immunizations. The AP analyzed that data and found the percentage of children inprivate schools who forego some or all vaccinations is more than two times greater than in public schools.

More troubling to public health officials is that the rate of children entering private schools without all of their shots jumped by 10 percent last year, while the opt-out figures held steady in public schools for the first time since 2004.

...
Vaccination opt-out rates nationwide have been creeping up since the mid-2000s, spurred in part by the belief the battery of vaccinations routinely given to infants could lead to autism. Several major studies have discredited that idea.

Parents are allowed to forego vaccines for philosophical reasons in California and 19 other states. Of those, only Washington requires parents to consult with a physician. And, in California, there's no difference between private and public schools when it comes to what's required for parents to opt out — they simply sign a document. The state recommends that kindergarteners receive five vaccine progressions, including protections against Polio, Hepatitis B and Measles

Cameras in the Classroom

Previous posts have discussed abuse of special-needs kids in schools.  In some cases, there is video or audio evidence. ABC News reports on one response:

A grassroots movement to put cameras in classrooms, driven by the parents of special-needs students, is simmering across the country. It's a personal crusade for many of the parents who say their children have suffered abuse at the hands of teachers and classroom aides with unsatisfying consequences.

Parents in states such as Ohio, Texas, Michigan, New Jersey and Tennessee have taken to the Internet to promote their cause with petitions, videos, Facebook pages and letters to the president. Many of their children either cannot speak or have difficulty with verbal communication

An Incident in Sierra Madre: Update

Previous posts have described an incident in Sierra Madre, California.  On August 30, LA Weekly reported:

For the past two years, Tony Brandenburg -- lead singer of seminal Fullerton punk band The Adolescents -- and his wife have been caught in a struggle with their community school board and parents from Sierra Madre School in Sierra Madre (part of Pasadena Unified School District), whom they claim discriminated against their Autistic son.

On Tuesday night the Brandenburgs rallied several dozen friends and supporters together at the Pasadena School District's public board meeting, many holding signs and some in ski masks. They called for a censure of Board of Education Vice President Edward Honowitz, who they believe violated policy and conspired with other parents at their son's school, resulting in his removal from his first grade classroom last year, and again this term for second grade. Their son suffers from sensory processing disorder, a neurological problem associated with Autism, that results in confusion and distress in those afflicted when overstimulated.

Earlier this year the couple called, in vain, for an investigation of Honowitz, whom they also believe held secret meetings with parents of their son's classmates. They say he has also altered and withheld documents relating to their son's education, including a petition signed by other parents citing him as a classroom distraction and requesting his removal. The Brandenburgs allege that no one worked with them to learn about his disorder or how to deal with it, and that their son has been bullied by other kids at the urging of their parents and with the approval of Honowitz.

Harvard Does Not Cover Autism

As previous posts have noted, state insurance mandates do not apply to self-funded plans, which come under ERISA.  The Harvard Crimson offers one example:

In 2010, Governor Deval L. Patrick ’78 signed House Bill 4935 (An Act Relative to Insurance Coverage for Autism Spectrum Disorder), which required private health insurance plans to provide coverage of medically necessary autism therapies. The bill went into effect on January 1, 2011. Before this bill, the lack of coverage for autism therapies had been an enormous financial burden for families. More importantly, it meant that each individual that went untreated was losing precious time in which to make developmental gains. Denial of coverage has long been recognized as discriminatory to the special needs population and their families.32 states have enacted such legislation to combat insurance discrimination and meet the urgent needs of individuals and families profoundly affected by the challenges of living with autism.

However, at Harvard, the financial burden continues, along with parental grief that ones’ child is not getting the critical therapies needed to make progress in all areas of development. Due to an exemption in the state law, the families of Harvard employees continue to be excluded from coverage for much needed autism therapies. Under the Massachusetts law, self-funded plans, like Harvard's, are not required to provide medical coverage for autism treatments. Harvard employees and their families remain without access to the unlimited and intensive therapeutic and rehabilitative care (particularly Applied Behavioral Analysis) which has been deemed necessary by Harvard's very own medical researchers. Such services include training for parents and primary caregivers in order to help them manage their children's self-care skills, behavior, social skills, and communication. ABA is the most commonly prescribed therapy for individuals with autism, and, in addition to being endorsed by the medical community, it isrecognized as the most effective treatment by the Surgeon General, the National Research Council, and the American Academy of Pediatrics.

Community First

The Sacramento Business Journal reports:

California will be the first state in the nation to receive Medicaid dollars under the Affordable Care Act to provide home and community-based services for at-risk seniors and people with disabilities as an alternative to nursing home or other institutional settings. 

A new Community First Choice program established by federal health care reform provides a 6 percent increase in federal medical assistance for Medicaid enrollees who require an institutional level of care. 

California will get about $573 million in additional federal funds during the first two years of the program in an effort to encourage individuals to stay in their community rather than seek institutional care. A total of $258 million will be provided during the first year of the program, with $315 million to follow in the second year.

Scathing Critique of the "Inflammatory Disease" Hypothesis

 At the Philadelphia Inquirer, Michael Yudell offers a scathing critique of a new hypothesis about autism causation:

At quick glance, a recent opinion article in the New York Times by writer Moises Velasquez-Manoff, claiming that “perhaps one-third, and very likely more” of autism cases look like a brain-damaging inflammatory disease caused by a parasite deficiency that “begins in the womb,” offers interesting insight into the science of autism causation. Researchers around the world are hard at work trying to decipher the puzzle that is autism, and Velasquez-Manoff draws attention to some of their work.

But upon closer inspection the article’s claims about the causes of autism and its possible treatments and cures are not an accurate reflection of the best state of the science, may generate widespread misinformation among a public impatient for answers, and should caution us about how to present ideas about a disorder that has witnessed the communication of so much bad information. (For me, this is more than just another blog post. The history of autism, and the impact of poor communication about the disorder to the public, is one of my research interests and the subject of a book that is in the works. A paper I led examining the challenges of communicating autism risk was just published online ahead of print in the journal Autism.)

If the commentary had simply claimed that research is examining the possibility that autism is a brain-damaging inflammatory disease and that it might be caused by a changing microbial environment to which humans are poorly adapted, there would be little controversy here. There is research around the world examining these very issues. But Velasquez-Manoff, a journalist who has a new book out this week titled An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases, makes claims that are inaccurate and in some cases simply untrue, leaving readers of one of the most distinguished opinion sections in the world with a false impression of autism causation and a possible cure.

Read more: http://www.philly.com/philly/blogs/public_health/And-the-latest-cause-of-autism-is-----.html#ixzz25dkp2cI6
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Outcomes Research

The big question for young people on the spectrum -- as well as their families -- is:  "What happens in 10, 20, 30 years?"  Unfortunately, the literature on outcomes, especially long-term outcomes, is sparse. The journal Autism has an article by Natalie A Henninger and Julie Lounds Taylor, "Outcomes in Adults with Autism Spectrum Disorders: a Historical Perspective."  The abstract:

In this review, we examine the ways in which researchers have defined successful adult outcomes for individuals with autism spectrum disorders (ASDs) from the first systematic follow-up reports to the present day. The earliest outcome studies used vague and unreliable outcome criteria, and institutionalization was a common marker of poor outcomes. In the past decade, researchers have begun to standardize the measurement of adult outcomes with specific criteria based on friendships, employment, and living arrangements. Although nearly all of these studies have agreed that the majority of adults with ASD have poor outcomes, evolving concepts of what it means to be an adult could have an impact on outcomes measured. For example, some researchers have suggested that taking into account the person-environment fit could reveal a more optimistic picture of outcomes for these adults. Suggestions for future research are discussed.

The Prevalence of Bullying

Reuters reports:

Close to half of all teenagers with an autism spectrum disorder are bullied at school, says a survey of their parents.

The results, published Monday in the Archives of Pediatrics & Adolescent Medicine, suggest that rate is much higher than the estimated 11 percent of bullied kids in the general population.

Previous studies have found kids and teens who are bullied tend to be more depressed, lonely and anxious and do worse in school than those who aren't picked on, according to the researchers.

That means bullying could make things extra difficult for those with autism, who may already struggle more in school than other kids.

The researchers say the findings suggest schools should target their anti-bullying campaigns toward the more vulnerable populations, such as children with autism and attention deficit/hyperactivity disorder (ADHD).

Autism: Social Model and Medical Model

Is autism a disability or a difference?  A medical construct or a social construct? n the San Diego Law Review, Kevin M. Barry has an article titled "Gray Matters: Autism, Impairment, and the End of Binaries."  Here is the abstract:

First diagnosed by psychiatrist Leo Kanner in 1943, Autism has exploded into the public consciousness in recent years. From science to science fiction, academia to popular culture, Autism has captured the world’s attention and imagination. Autism has also ignited a fierce debate among stakeholders who seek to define its essence. Many parents of Autistic children regard Autism as a scourge and press for a cure. The Neurodiversity Movement, comprised mostly of Autistic adults, regards Autism as a different way of being worthy of respect and even celebration. The Autism war is well underway and, given Autism’s swelling ranks and proposed changes to the American Psychiatric Association’s Diagnostic and Statistical Manual in 2013, this war shows no signs of abating.

Notwithstanding its rise to prominence in recent years as something both terrifying and terrific, Autism remains understudied in legal scholarship. This Article situates the Autism war within the larger theoretical debate over the social construction of disability and impairment. This Article accepts the “social model” of disability’s claim that disability is socially constructed and rejects the “medical model” as a theoretical model altogether. But “disability” – socially constructed or not – does not explain the Autism war. “Impairment” is where the action is.

This Article argues that while impairments like Autism may refer to some biological pathology, they are in part socially constructed. Autism is constructed not just by medical researchers and clinicians who name and diagnose it, but also by those who are so named – Autistic people, themselves, many of whom define Autism as a different way of being. Autism may be both a (still unknown) biological pathology and, according to Autism’s “Neurodiversity Movement,” an experience. While this understanding of impairment cannot make peace between Autism's sides, it helps to explain how the sides are at odds and why they are likely to stay that way.

Another Walker for Autism

An earlier post described the long-distance walk of Troy Blevins, who made his trek to raise autism awareness.  As WDTV reports, William Cefalo of Brooklyn is doing something similar:

Pediatricians and Diagnosis

Previous posts have described the often-unhappy interactions between pediatricians and parents of ASD children.  In a letter to the Journal of Autism and Developmental Disorders, Amy Sudhinaraset and Alice Kuo write of a small-sample study:

For this interview series, 13 in depth interviews were conducted with a total of 3 fathers and 11 mothers who  were an average age of 44.7 years. The children consisted of 11 boys and 2 girls who at the time of  interview had an average age of 11.4 years. Transcripts were coded and analyzed using a qualitative analysis program to look for themes.

Of the 13 parent interviews conducted, all but 1 parent reported a negative experience when they approached their pediatrician with their concerns for their child’s development. [emphasis added] The average age that parents first suspected their child was not typical was 1.7 years, the average age of formal diagnosis was 4.4 years, resulting in a 2.7 year delay in diagnosis. The parent who had a positive experience had the earliest formal diagnosis at 17 months. Of the 13 parents who expressed concerns, 7 mentioned that their pediatrician did recognize some component of developmental delay in their child and 5 of them were referred to a specialized developmental service despite the fact that their pediatrician was unable to specifically recognize ASD.

Lisa Jo Rudy put the problem succinctly:  "Most pediatricians are not highly trained in picking up developmental red flags. And they see a lot of kids who have slight or brief delays and then develop normally. Parents, nannies and daycare or preschool providers, though, see your child every day. Where your pediatrican may see shyness or a mild delay, you may see a pattern."

Police and Autistic Adults

Previous posts have discussed encounters between ASD people and police, as well as other first responders. A release from Autism After 16:

When an autistic adult has a meltdown that family members can’t control, police officers are sometimes called to the scene. How the interaction progresses can be influenced by how well local police understand Autism Spectrum Disorders (ASDs) in general and the needs of their specific community members. Autism After 16 sheds light on this issue in an article called, “Well-Informed is Well-Armed: Easing Police Response to Domestic Incidents.” Written by Police Officer Jerry Turning, who has a son with autism, the article seeks to help families work with local police by providing information and education.

Turning, who has previously written for Autism After 16 on the subject of autism and wandering, is a police Lieutenant in a municipal police department and a certified police K9 Handler and Trainer. His son was diagnosed at 2 years old with autism. He sees a gap in understanding between families and the police and is committed to helping educate both sides of the equation.

“Just Google ‘police and autism’ and you will see page after page of tragic encounters between police and ASD individuals,” Turning says. “That’s simply unacceptable. I believe that many of these tragedies can be attributed to poor communication between the police and the autism community.”

But writing about these issues can be as complicated as the autism spectrum itself, and Turning hopes families will extrapolate from his insights to their own experiences. “Autism is a spectrum. Writing about it in general terms is difficult and sometimes frustrating. Many of the suggestions and examples I provide may not apply to your particular loved one's situation, abilities and challenges. My sincere hope is that everyone who reads my articles can find at least one or two tips that might help in some small way,” he notes.

Having a son with autism has taught Turning a great deal about the needs of this population. “I have found there is an enormous amount of ignorance and misunderstanding about autistic individuals and their families. That is my singular focus when I write: to reduce that ignorance and increase understanding … for my son.” What’s the single most important thing Turning wants police to understand about autistic people? “Challenges in expressive language and communication do not necessarily correlate with lack of intellect or inability to understand language.”

Autism After 16 is a website devoted to providing information and analysis of adult autism issues. Over 50 percent of its contributing writers are autistic adults, while many others are family members. Autism After 16 provides informational articles on accessing adult services, links to useful resources, and a library of videos to help teach independent living skills